Monday, May 5, 2014

FRAGILE-Handle With Care

As I type this, I'm in bed.  Literally, in bed. I've been here all day. 
All day.
Surgery recovery is a lonely business.
No one can really help. 
My mother recently said to me that I am in "survival mode".
Am I?
I laugh and joke when I can...and probably more when I shouldn't or when things are really bad.
I fire off a semi-interesting blog post or Facebook status and Voila! Everyone thinks I'm happy and that I'm all healed up and ready to take whatever they choose to dish out.
Yesterday, I saw a post on a blog called "Life With The Lyons", 
In this post, the mom  (mother lion) was defending her husband, apparently her husband has Chiari and/or related disorders and someone at their church offered comfort by saying to her, "At least it's not cancer."  This Mama Lion was furious.
I don't blame her. I even applaud her.  Good for her. 
She made a quick list of things to NOT say. 
Seriously, it's not that we are that difficult to deal with--we are just exhausted. Completely, totally exhausted. Our skin is not thick. We are FRAGILE.
Please, handle us with care.  

As I type this, I'm in bed.  Tears are literally pouring down my cheeks and my already sensitive vision is even more troublesome with the presence of these waterworks. 
In the past two weeks,  I've been pretty secluded. 
My texts are brief and sometimes I don't answer phone calls.
I explain this to people and apologize for being light sensitive or feeling weird when I talk. 
The usual response I get is no response or , "I won't bother you then" ( which they obviously mean because I don't hear back from them... EVER.) 
I live where I know few people. I have only an occasional visitor even when times are great...
My "friends" all live far away and I greatly fear I have successfully eliminated them without purposing to do so. 
One such person tells me I've built a wall around myself. 
Thus, the tears. 
I rush into the other room and bury my head in Bob's chest and he holds me as I pour out what a horrible person I've become and how everyone seems mad at me and how I can't help it and how I just need him to take care of me. I look at him, his kind eyes are tired. Now that my caregivers have both gone home, it's all on him and its too much. He is taking care of me as best he can. This is the third day with just the two of us and it's too much. He makes sure I eat and sleep and drink, he cares for the dogs, he goes to work, he listens to me whine and all I want is more.
I will my body to be more energetic and my head to not hurt and tears to not fall..and my body refuses to comply. Like a rebellious child stomping its feet, my sobs cause my head to throb, each beat of my heart causes pain in my head mixed with the pressure of crying and I'm nothing but a fragile mess. 
So I retreat here to you-my blog- the place where I say what I want unashamedly and the blank page welcomes my words and my wounds. Here, I can dim the brightness, make mistakes, take breaks and no one is the wiser. There is no judgement here and no expectations. Crying is totally allowed and completely necessary.  No one is telling me how busy they are or making excuses as to why they haven't called.
No one is making it my fault or making me feel guilty or making promises they don't intend to keep.
No one is telling me to be thankful it's not worse.
Here it is quietly welcoming and my soul is soothed as I once again talk myself down off a cliff, tears dwindle and the roller coaster slows to a stop.

My hand traces the incision on the back of my head and I am horrified and amazed at the reality that this has really happened. I had brain surgery-again. This is no walk in the park. It's okay to be however I am. 
Maybe one day I will be able to explain that in a way that can be understood by everyone, not just the other people like me. 
Pity is not what I want. 
I need you to understand, I have changed. 
I didn't quit loving you or being your friend. 
It's just that now I am fragile.
Handle me with care. 


  1. And I also told you that I would add you to didn't I? Put your story up there. But if you don't want me to that's ok too but I need you to tell me that's what you'd like to do. I'm sorry you feel like I'm so rude but I have brain damage too and I asked you a while ago to just post the link because when I looked down the page it was mostly a link to your blog with your photo which looked like an ad. I'm happy you get the support you need elsewhere but I don't think I'm asking too much to just post the link. You can do that without the photo.

    I'm sorry I screwed up but that's just the nature of the beast and accepting other people with brain damage which is hard to accept as we are all different.. And you are gone so that makes me sad because I wanted your blog to circle through and change when you changed it but the group is different. Especially when there are like 3 posts a week.

    If you'd like that then let me know. I find that more acceptable.

  2. The whole idea is to help others. I would appreciate you sharing it on your website. Thanks so much. Michele

  3. These post-surgical posts have been amazing and inspiring...THANKS! I am amazed that you have been able to write so much so soon. I hope your recovery advances quickly.

  4. These blogs are amazing!
    You go girl!
    I hope you are doing well. I had a great recovery, surgery was very easy for me.

  5. Thank you for your wonderful blog. I am recently diagnosed as of April 2014. My surgery is in about 2 weeks Aug 21st. I am so happy to have found your blog. My Chiari has progressed so rapidly. I find strength in Jesus. I have a great support system, so I feel lucky. However, no one can understand me like another Chiarian. I am also a nurse like you I am a LPN and a mom that home schools my 2 kids. Thank you again for your blog. I have poured over your post these last 2 days.